Lost and Found: Creating Community Around Infertility and Pregnancy Loss
Not long ago, I was sitting at a coffee house, nursing my latte, as I waited for a client. A woman at the next table caught my eye. Her keys were jingling as she rifled through her purse, looking for something on the bottom. She started emptying the bag onto the table in front of her. An old makeup case. A few tissues. A pacifier. A bunch of coins.
And then came a crumpled strip of paper. As she tossed it carelessly on the table, I saw that it was an ultrasound strip of a baby. I tried to sit calmly and distract myself with the latest post on Facebook. But then the room started spinning. I felt dizzy and nauseous and sweaty. My heart started racing and I was transported to a time not so long ago.
You see, I am scarred. I look at the world of childbirth through tear-stained glasses. Thankfully, I have five children. But I also had an eight-week miscarriage, one at the five-week mark and four second-trimester losses in the span of 30 months, all at 16 or 17 weeks. Two boys and two girls. Genetically perfect. The only problem was that their hearts stopped beating.
Most women have it very differently. Their pregnancies start with jubilation, hoping, dreaming and planning. Will it be a boy or girl? Will her hair look like mine? Will he have your blue eyes? And that’s exactly how it was when I was pregnant with my first child. Everything went like clockwork. I got pregnant within a few months of our wedding. I had some nausea, but it was not debilitating. I worked throughout most of my pregnancy. And we were overjoyed to give birth to our daughter, full-term and healthy. I couldn’t wait to do it all over again.
We tried and tried for months, but the ease with which we got pregnant the first time eluded us. I started obsessively checking my temperature every morning to see when I ovulated and peeing on a stick multiple times a day, trying to catch the window when I would be most fertile. My days were bookended with appointments — I started out at 6 am at the Reproductive Endocrinologist (“fertility doctor”), went back for more needles after work from the Acupuncturist and spent hours combing the internet for answers at night.
After a round of clomid and IUI (intrauterine insemination), I finally got pregnant again. My husband and I were elated. It finally felt like our time had come. We struggled and suffered, but now here was our long-awaited victory. It was all going to be fine. And the pregnancy started off so seemingly normal with cravings and minor mood swings.
But then I went for an ultrasound. I still remember the moment exactly. The doctor was joking, I was smiling, and then he used the probe to look for the heartbeat. And immediately I knew. I’m a doctor. I know what to look for on the ultrasound; what should be there, what shouldn’t be there. I’ve read many myself. And there was no heartbeat. Nothing.
At that moment, my world crashed in all around me. We already struggled with infertility. I deserved happiness. I earned it. How could this be happening too? This was supposed to be my miracle baby!
What made things even more heartbreaking was that the bliss of a “normal” pregnancy was gone too. Every subsequent time I got two lines on a stick, I began an endless spiral of negativity and petrifying fear, filled with bouts of crying and sleepless nights. The crippling anxiety about my baby dying was the most debilitating.
There were times I would pray to G-d, beg Him to let this one live. I spent years being pregnant but too scared to tell anyone about it, for fear that just by speaking an evil eye (ayin hara) would be cast on my baby. I bargained a lot: “If this one lives, I’ll be a better Jew.” Or, “ I’ll call my mother more often.”
It was the worst period of my life.
To compound the pain, the stupid, unhelpful comments started rolling in. “Well, it was for the best.” “Oh, you’ll get pregnant again and forget this ever happened.“ “At least you have a child.” “Don’t worry you’re young; There will be others.” Or, the worst one of all, “Hashem has a plan.” Yeah right; G-d has a plan to make me miserable? Again and again? I’m not a good mother, so I can’t have one more? Each time someone said something like this, I cringed, and cried more.
The secrecy, the stigma and the shame made everything much worse. What is it about miscarriage and infant death that makes it so hard to speak? Why can’t people acknowledge that a fetus, though not fully matured, is still very real to his/her parents?
Why is it that when suddenly the heart stops beating, we are told to move on, forget about it? Pretend it never existed and become an amnesiac about all the days you spent hovering over the toilet?
I recently heard someone share about a baby that died: “She was here, she was real, she mattered.” And that’s exactly it. These babies really do matter. They were wanted, loved and planned.
The longing for a child is a deep-rooted, maternal instinct that cannot be easily squashed. For years, I suffered, hoping and wondering if I was ever going to bring another child into this world. The one thing I promised myself during those dark times: if I could help just one person by sharing all that I have learned and experienced — whether medically, psychologically or emotionally — I would do it.
Today, I work alongside Reva Judas and a wonderful team of women at NechamaComfort. We spend our days and nights legitimizing people’s babies, caring for the families, giving them space to grieve and cry and scream — and then guiding them through the months and years ahead. This is a population that often gets shunned and forgotten. We spend many hours of our days giving voice to this pain. Parents deserve to grieve the loss of a pregnancy or infant.
Sometimes parents want to let go — that’s okay. But often, it’s society’s pressure that forces them to smile and laugh well before they are ready. I tell women that it’s okay to be scared, it’s okay to grieve, it’s okay to miss their babies. I normalize the experience of loss and let people know they are not alone.
Part of my work involves educating communities, workplaces, medical personnel and clergy. We teach these individuals, who are on the front lines, how to be more sensitive to those who are suffering; how to take better care of those who have experienced loss. Slowly, we are making headway.
Now, when a tragedy happens, I get phone calls and texts from relatives or friends (sometimes even before the couple themselves), wanting to know how they can be helpful. I’ve had a husband call me right after his wife had a traumatic delivery of a stillbirth to find out what to expect in the days, weeks and months ahead. People show up at our monthly support groups and pour out their hearts in front of like-minded strangers. I am proud to be slowly changing a culture of silence and shame.
Frequently, I think about the woman with the crumpled ultrasound. I wish I could turn back time and go back to being you — blissfully unaware that the world is a scary, uncertain place. But I can’t. What I can do instead is try to chip away at society’s notion that having a child is easy and effortless. For those who are triggered by every pregnant belly or stroller? Please call us. We can help. We have been through the trenches. We can help lead you out.
Dr. Aimee Baron is the Director of Innovation and Growth at NechamaComfort, an international not-for-profit organization supporting families, of all Jewish backgrounds, through the trauma of miscarriage, stillbirth or infant loss. She worked as an Attending Pediatrician in the Newborn Nursery and Neonatal Intensive Care Unit at St. Luke’s-Roosevelt Hospital before taking a leave of absence after her third miscarriage. Aimee lives in Riverdale, NY, with her husband and five children.